Home Sweet Home
We have been home from the hospital for about ten days now.
I wanted to write but there were no words coming to me. Perhaps it is from exhaustion or that weird feeling that I remember of returning home from overnight camp when nothing seems to make sense at home. Nothing makes sense right now so all I am left with is a list of random thoughts.
- I miss the hospital. How can I possibly miss the hospital? I miss the routine and the structure and the feeling of safety knowing that someone else is making all the decisions for you and taking responsibility for everything.
- Once you leave the hospital, you are on your own and therefore I feel the weight of making sure we don’t do anything wrong. However, we are still very dependent upon the therapists and doctors and no one does what we want them to do when we want them to do it.
- By the way, Max graduated from middle school and most of the town shed a few tears watching him get his diploma. There is so much to be grateful for and so much to celebrate. We hope we have done that because we are so proud of both kids for achieving so much.
- Everything should be about Max and his progress. Nothing else can matter, but I still have to do all the things that don’t matter.
- People are nicer to you when you use a walker than when you just walk with nothing and have a CP gait. No one is particularly nice to you when you walk in a different way – they kind of just get annoyed, but everyone loves a kid with a walker. It has been true for Max’s entire life.
- I actually have more and better friends because of Max’s surgery. I have a few brand new friends, a few old friends who have come back into my life because of their concern, interest and overall goodness, and a few new facebook friends. That is a surprise blessing I could not have imagined.
- It’s hard to convince a now 14 year old boy that the only thing he is supposed to be doing this summer is getting better. That is kind of weird.
- I am still terrified that the surgery was a mistake so I am observing every single detail of Max’s physical existence 24 hours a day looking for clues. There are a few reasons why I think perhaps it was a mistake, but also reasons why maybe it wasn’t. Can’t something ever just be clear? Are his legs getting stronger? Is he sitting straighter? Did he move his toe more? Did he take a bigger step? Did he stand taller? Did he tell a funnier joke? We are supposed to give it several months to a year to see if it was successful – but I am not patient enough. My brain will explode… actually, explode.
- I am a nag. I am nagging the boy every minute to do something “better, more, again, the right way, take medicine, go to the bathroom, do your exercises, eat something, don’t eat that, drink something, don’t drink that, do something, stop doing something, put away the phone, read a book, push yourself harder, don’t push yourself so hard, go to sleep, get up already!”
- We have done a lot since being home – a lot for us – but all of us feel like we are still waiting for summer to start. Every time I see someone in a bathing suit, or leaving for camp, or going on vacation, I wonder why they are having summer vacation in the middle of winter. Wait…what,it’s almost July? Anyone want to have a BBQ?